On Monday morning Feb 4th, I was all packed up to go to the hospital for my last round of Methotrexate and long hospital stay. I was thinking in the car the whole time about how my blood counts are going to be. I did not want to come back and then go again if they are still low. But when I heard in the hospital that my ANC was 1050, I was so happy that I am going to stay and get it over with. My treatment did not start it until late in the afternoon because my urine was not clear enough but finally I was in my hospital room waiting for the medicine to start. I know the whole routine now so it’s easy to deal with it. I knew I was going to throw up at least once in the night because it happened every time.
Next morning, I attended my school through the Vgo robot in the morning the best I could since I was not feeling that well after waking up. I later had a great time with the dietitian and her cooking class. We made very healthy and nutritious breakfast of oatmeal waffles and Egg Frittata. Man it was so much fun and I actually felt like a cook. I loved eating self made waffles with the whipped cream, syrup and the fruits. My dad even got the recipe from her. That was the highlight of the day!
After my Methotrexate finished on Tuesday night, It was time for the blood test results for checking the toxicity level so that I can go home on time on Thursday. Actually my body did well with getting rid of the medicine. My toxicity level numbers were great each time. In 24hrs, it was 39.7 (supposed to be <150), 42 hrs, it was .24(supposed to be <1) and in 48hrs, it was only .27 (supposed to be <0.40). we were surprised that my results at 48hrs were a little higher than the 42 hrs which got my mom worried and so my dad asked the doctor who said that the lab must have made the mistake because it is not possible for the numbers to go up. That was a relief because I really wanted to go home and get over with this phase.
On Thursday Feb 7th, I was able to go home and that marked the END of 3rd phase of Chemotherapy. It also means that I have only one more phase left of intense therapy and then I will be able to go on Maintenance therapy. Then I will be able to go to school, get my port out and play hockey again!
On Saturday, Feb 2nd morning, I woke up so happy with my dad by my side. I am finally 11yr old. Everyone wished me Happy Birthday and I went on to playing on my I pad. Suddenly, I heard my brother and my mom singing Happy B’day with a huge bag of gifts. I was so surprised because I told them that I do not need anything. One by one I took my gifts out and I was so happy to get each one of them..Perfect choice of gifts ! As I was playing on my Roblox, I saw there is lot of money available to buy stuff. I looked at my dad, he smiled and said “Happy Birthday Arjun.” It was awesome. I got gifts from my brother and my grandma too. The best thing I got was Fitbit because now I can track my steps and it will motivate me to keep moving throughout the day. It can also check my blood pressure, my heart rate and calories burnt. I actually gained 3 pounds in last 10 days…sooooooo happpppy!!
I had the chance to enjoy with my little cousins on Sunday. I got Play station 4 for my birthday from my aunt and uncle which was a huge surprise. I actually had 3 cakes for my birthday, one on Saturday and 2 on Sunday. It was so awesome to be feeling good and being able to play with my littlest cousin, running after him all around the house. On Saturday, my friend/neighbor came over with a bag full of cards and a generous gift. When I looked through the bag, I found the hand made / written cards from my all my classmates. I am so Thankful to everyone who spent the time to make the cards for me and making my day so special! It was an overall a great Birthday weekend and hopefully I will be able to celebrate my next birthday on the ice with my team and with my classmates in school!
So this week was supposed to be my last and the final week of 3rd phase of the chemotherapy. I was gearing up to go to hospital on Tuesday early morning. On Monday night, I packed up all my school stuff, my mom helped with packing my clothes and the all the good yummy snacks. My dad had everything loaded in the car so that in the morning, we just have to leave. I woke up early in the morning Tuesday 29th, all excited to get up and get dressed. My mom was ready with my to go food and off we went to the hospital. The blood was taken from the port and the IV fluids were started while I was waiting for the blood test results. Then there was this news from the nurse that my ANC went down to 200 and they cannot start the treatment which meant that I had to go home. After all the preparation we did, this is the end result. I was so disappointed. I had to come back home and will have to go back again next week. I was relieved that she did not ask me to come back this Friday because that meant I would have to stay on my birthday in the hospital. I wanted to stay home for this weekend to celebrate my Birthday on Saturday with my family. The only good thing was that I was able to come home and attend the class in the afternoon and take the Math test with my classmates. I think I did pretty good in that because I checked and double checked to avoid silly mistakes. I have to show it to my dad that I have good understanding of the concepts in Math and I can do well in the test in less time.
I have been feeling good these days with lot of energy and good appetite. I even started my Spanish classes on Vgo. It was so cool but I have a lot to catch up. These days my mom and brother keep asking me what I want for my birthday. I told my mom that from God I want good health so that I can be like normal kid who can go to school and play hockey again. Also I think I have everything so I told my brother that I do not need anything at this time. I just want to get better soon. I am very excited for my B’day.
On Thursday Jan 31st, while we were watching the Rangers vs Devils game, we started to talk about me playing hockey again. My mom started to question me if I really think if I want to play hockey again and if I have it in me to work very hard to get back on the ice. I said to her “Of course I am going to play hockey again. So what it takes me more time to get stronger but I still have my skills and soon I will be able to go back to running fast again.” I know I have lot of wonderful coaches who I can go to help me out when I am ready. On Friday I went to bed all excited to wake up on Saturday as an 11yr old.
It has been long time since I updated my blog. Hey I was trying to enjoy all my good days! This time I have been good without the complaint of sore throat or being sick. I do not know if it because of the extra dose of the medicine or that my body is now immune to the methotrexate. The first few days were a little rough because I was tired and had sore legs and arms. My appetite was small at the beginning, but at least I was able to eat when I wanted to. One evening I was looking in the mirror and observed many dark spots on my face, and dark circles around my eyes. Or in other words, I looked very grey and weak. I asked my mom why do I look like that. She responded, “It’s because of the medication. It is just temporary. Don’t worry about it too much.” Now when I think of good old days, I used to have very clean face and such good hair, now it is always all over the place with hairless sections. I had been really annoyed that everything now is so imperfect now. Although I was upset with that, I still managed to have a good time with my brother at home.
I have been attending my classes regularly through Vgo robot and I am really up to date, at least that’s what I think. I finished all my assignments for math and science, literacy and home work for social studies. That is such a good feeling to be able to keep up with the class. I think Spanish is the only subject that will be hard for me to do since I have not been able to attend any classes or get the home instructions on. Hopefully I will be able to catch up.
On Thursday September 24th, I went to the clinic for the blood check up and that day I decided to get blood drawn from the arm instead of the port because it saves the time and I do not have to do the saline. My dad was worried that I might get scared and move my arm. But I stood still and the nurse was impressed that I did not even flinch. It was done fast and within an hour I got the results. All my numbers looked good and I was returned home until Tuesday when I have to go back. I started to feel much better and was eating very well and had gained 3 pounds by Sunday. My parents were happy to see me eat well and be happy with no soreness in the legs. On Saturday, my friend came over in the evening for sometime and it was so much fun spending time with him and talking about the school, fun stuff. I wish I could go back to school again soon!
On Wednesday Jan 16th, I woke up early morning at 6 AM to pack up my last minute things and get ready to go to the hospital. I was getting my 3rd round of Methotrexate. When we reached the hospital, we were the first ones to get the blood drawn from my port. While we were waiting for the report, the dietitian looked at my weight and was wondering how in the world I gained 3 pounds in 5 days. I told her that I was in mood for Indian food, so I ate it when I wanted to. She asked me the details of the type of Indian food I ate. My blood counts were good and there I went for the spinal tap. When I woke up I had my home cooked meal that my mom made early morning. It felt so good. I was moved to my room by late afternoon and the medicine and IV fluids were started. My job was to drink lot of fluids and eat well so that I do not throw up and get the toxicity out of my body.
I had first night in the hospital good without throwing up..Yay! I did fine the whole day with some low appetite but better than previous times. Attending the school through the Vgo robot really helps to pass the time and not feel bored. I finished all my math assignments and math home links in the hospital and I am upto date with my class. I had magician who came in and showed me some tricks. I even learnt one of them. It was cool! The massage therapist came and pressed in some areas which really hurt. She said that I am very tight in many areas in my back and the legs. I did not understand all the things that she was telling me but I was sore when she left. My dad and I walked many times in the hallway during the day with my IV pole.
My nurses in the hospital were super nice, polite and helpful. My toxicity level numbers were great each time. In 24hrs, it was 37.8 (supposed to be <150), 42 hrs, it was .32 (supposed to be <1) and in 48hrs, it was only .19 (supposed to be <0.40). I knew I will be released on Saturday based on the numbers. It went well this time in the hospital with no vomiting, some pain in the legs, no sore throat but low appetite. The doctor gave me an extra dose of Leucovorin to see if that will help prevent the sores in my throat. On Saturday Jan 19th, I was allowed to go home by late afternoon. Other than being sore in my body I was feeling great to come back home sweet home!
I had good few days from Sunday Jan 13th to Tuesday Jan 15th. My throat was not bothering me and I ate a lot of food because my goal was to gain pounds before I go back to the hospital. I also had good days with my school assignments. I made sure I complete some of the math assignments and social studies assignments at home. These were good days as compared to the previous ones. I was even able to attend the event at my grand uncle’s house. It feels awesome to get out of the house and meet people. It was funny that I ate good food at their house and while coming back I asked my dad to get me some Chinese food which I actually ate at home.
On Tuesday night, my parents were busy packing for Wednesday morning to go to the hospital. I had to eat 2 dinners one early evening and one very late because I had to stay NPO after 11:30PM for the spinal tap next morning. When I checked my weight I saw that I gained 3 pounds since Thursday. I screamed loudly to tell my family and broke into my happy dance. They got scared first thinking what happened and then they all started laughing looking at me.
I was so happy when I woke up Sunday, January 6th, morning after coming from the hospital. I had very good night sleep in my cozy bed. But as the day progressed, my throat started to get worse and by Tuesday, it was so bad that I could not even swallow the water. I was taking the medicine with so much difficulty. I was getting irritated with every little thing and everyone asking me what I want to eat. I knew this was going to happen and I had told my mom on Sunday itself that it gets worse on the 3rd day. I tried the warm water gargles which helped a little bit. My mom wanted me to go see the doctor on Wednesday morning because she did not want to see me suffer. But when I woke up Wednesday morning, I was a little better so I did not go to the doctor. I managed to eat some liquid soft foods that day. I even attended my home instructions that day. My teacher said that I am catching up fast with my all my classmates.
On January 10th Thursday morning, I had to go to the clinic to get my counts checked. The doctor said that it is because of Methotrexate , I get the Mucositis, which means I get sores in my throat. I have to take this medicine 2 more times this month. I met the dietician there who said that I have lost around 5-6 lbs since the beginning and I need to eat a lot of fat to gain weight. If I do not eat and keep on losing weight then she will have to put the nasal tube or feed me through the port. I do not want that. It made me very worried and sad. I told my dad and mom that I will try my best to eat. I think eating has been the hardest part of the whole treatment journey for me. To cheer me up, I got the good news that my ANC was 2700 which is in the normal range which means I could go out for sometime if the weather is good. I felt much better on Friday and was so excited for the home instructions for Math and Science. Now I do not have to do much in home instructions because I am catching up in class with the Vgo robot. I got my Math test paper where I scored 100% and my dad was so proud of me! My teacher gave me assignments for next week too as I will be going back to hospital again.
On Saturday, I went out to see some family and friends and my throat was doing much better. I ate well and I was so proud of myself..haha! My goal is to gain 2-3 pounds before i go back to the hospital to show to the dietitian that i am strong and handle this problem too. I had my friend come over for sometime which make me feel so good to hang out with someone. I received the card from school nurse who is always thinking about me. I want to thank her and my school counselor who is always trying to help me with my Vgo robot and any other school concerns. My school has been so good to me and I want to thank everyone for being so accommodating!